Wednesday, July 19, 2017

Ella and her Epilepsy

Finally something a little positive.

We adopted Ella when she was three and a half. Within 2 years she was having mild drop fits. She would be doing an activity and fall to the floor, would only be a couple of seconds and then she would continue with her activity. As she got older and was mobile she would have a lot when she was walking so would end up with cuts and bumps.

These continued throughout her childhood. She was seen at John Radcliffe who did a 24 hour EEG but we were advised she didn't need any medication as they didn't think it would have any effect.

When she was 12 she had her first tonic clonic seizure. Arms and legs rigid, non-vocal, a typical big seizure. She was admitted to Royal Berkshire Hospital the first time. Over the next few months she had around half a dozen tonic clonics but once the right dose of Epilum was found the seizures stopped. Again we went to John Radcliffe who confirmed she was now suffering from 2 types of seizures.

She went 5 years without any seizures, big or small.

However October 2016 she started having slight tremors in her hands, most noticeable when she was holding a cup. As parents we thought maybe she needed her dose increasing slightly as it hadn't been changed for the 5 years. The Consultant though felt it was a side effect of the Epilum and over an 8 week period weaned her off of the Epilum onto the Keppra. The rest as they say is history.

Ella has been in a state of anxiety since the reduction and removal of Epilum. She says she feels shaky, sometimes in her head and sometimes all over.Stopping the Epilum seems to have unbalanced her, as I mentioned earlier she went 5 years fit free whilst on it. In hindsight slight tremors may be a small price to pay to have Ella return to a more balanced physical and mental state.

Fast forward to today and the care home had managed to get Ella an appointment at the National Society for Epilepsy, the UK's leading provider of epilepsy specialism. We sent a written record to date as we couldn't be there. The Consultant though phoned us and for the first time in ages we felt a doctor really wanted to help Ella.

Moving forward she is to have:
  • A genetics blood test to find out exactly what her syndrome is. When she was diagnosed with Floating Harbor Syndrome there was no blood test available so it had been a clinical diagnosis but now they can actually ID it. The Doctor was not very happy when I said that she hadn't had a genetic test, when one of medical reports stated she had!
  • An MRI, a current EEG and a CT. She was professionally surprised Ella hadn't had an up to date EEG since the onset of the tremors. And even more surprised Ella has never had an MRI or a CT scan. Hmm.
  • Organising a specialist consultant psychiatrist. 
  • This will all happen in the next 6-8 weeks and Ella will stay overnight. It will feel like a mini break for her! They suggested 5 days, but Jeff and I felt that staying somewhere else so soon for so long could totally unbalance her.
So, in a nutshell, we could not be more impressed with the Epilepsy Society......but can't help wondering whether Ella has been short-changed all these years.


  1. hopefully you will get some answers and better support for her (((hug))) xx

    1. Thank you Sue, there's so many problems, but if we could at least start to chip away it'd help her so much xx

  2. That's great that she is going to have all those tests to help get this under control!

    1. Thanks Jo, we're really pleased, but also a little cross that her local Consultant didn't suggest any of this last October x


Love to hear from you. Please leave your thoughts below. Suzanne xx